Live chat with expert: Angela Taylor
Angela Taylor of the Lewy Body Dementia Association and host Lakelyn Hogan of Home Instead talk about caring for individuals affected by Lewy body dementias (LBD). LBD are the second most common form of degenerative dementias after Alzheimer’s disease, but much more awareness, education and research is needed. Topics this chat covered include:
- The cognitive and behavioral symptoms of LBD
- Why early and accurate diagnosis is essential
- Care techniques and treatments to improve quality of life
- Current research efforts
My husband has LBD and has recently been put in a interm personal care home waiting for the home of our choice. It is very difficult watching him deteriorate and is very confused. Any advice would be greatly appreciated.
I just found this link
And my husband is now in a care home I feel guilty all the time and it hurts so much I cry every day I miss him everything you describe is my husband thank you for helping me understand
My husband died nearly 1 yr. ago with LBD. It was sad to watch him worsen, especially those last months. He eventually seemed to lose all awareness of reality. He was in a nursing home since he could not care for himself at all. He also suffered from hallucinations, some of which caused him to believe I was involved with other men. He became combative and our family and I feared he would harm me, since he was physical with me. The fact that he needed a facility instilled guilt in me. He had digestive problems, suffered from Sundowners Syndrome, couldn’t sleep and became depressed. He suffered at his greatest for the last year. He lost a huge amount of weight during his last 8 months of
life. I don’t mean to scare anyone, as symptoms may be different for some. Looking back, I wish I hadn’t been as fearful of him but I realize I responded with my own defense to the uncertainty of what was happening to him. He was pitiful in the end and when I realized there was no hope for improvement, I prayed for his release, as our faith assures Heaven awaits us. I now understand I did my best in helping him. I would advise anyone living with an LBD patient to go through it a day at a time and to educate themselves and understand the disease. If they eventually need care outside the home, don’t allow your own guilt or the guilt other people may attempt to cause in you to affect your decision. It may well become a situation that will cause health issues in the person who lives with the patient, as it is stressful to care for them. I was advised and made the decision to place my husband in nursing care out of fear he may hurt me when he was physically combative with me as well as my inability to care for him in my own strength. It would’ve been helpful if I’d known more about the disease before I experienced my husband’s journey through it. Ultimately, my relationship with God gave me the strength to face the process of my husband’s LBD. I believe it was Him who revealed the progression piece by piece. He knew what I could handle and directed me in accordance with my own ability.
Very informative, thankyou so much. I have my mother at 86 yrs still living independently. We have recently hired Home instead 2 days a week for 3hours a day. The second visit is tomorrow. My Mom loves her caregiver so far. My Mom has not been assessed, as her Dr. Is not thinking it is necessary. I clearly disagree. Don’t know where to turn now.. Alzheimer’s is clearly in Mom’s family. She has lost her siblings (4) to dementia or Alzheimer’s.
Find a different doctor- one that listens to you, as you know your mother best and will be responsible for her care. Early assessment and regular follow up will greatly improve her quality of life and ease the burden on her family and caregivers. I have done home health care for 20 years, the last 7 have been almost all people with dementia. LBD is especially challenging because of the hallucinations and not all caregivers know how to handle it. My clients with attentive, informed physicians had a better quality of life and were able to stay at home longer- two until the end. People will try and tell you that, due to their dementia, there isn’t any real benefit to keeping them home since they “won’t know the difference,” but they do! They might not be able to say, “I am home,” but they know they belong there and are comfortable. Every client I have had that went into a facility passed within a few months, and they spent those months confused and unhappy. No matter how good the facility, they will never get the personal care they need and these places are notoriously short staffed. Good luck to you in your journey. Take any and all help you are offered; it is all too easy to burn out.
My ex-mother-in-law who is 82 is caring for her husband with LBD (it runs in his family) and their mentally challenged daughter who is in her 40s… so hard, I pray for all of them.
How do I know my Mom really has LBD. My sister and programmed symptoms when speaking to facility staff. She does not hallucinate like my sister describes. She dreams, and speaks of her dreams. She does have sleep issues. She will be 91. There is no solid determination of this, correct? My sister has her off medicine, she says it is more harm